I've been sick since I was very young. We didn't know it at the time but when I was still a child I was sick with Multiple Sclerosis, a chronic, progressive, debilitating disease of the central nervous system. It wasn't something doctors thought that children got so no one looked for it until 11 years later when an amazing neurologist took the time to really listen to me and run some simple tests. He told me at the time he knew I either had a brain tumor, MS, or ALS and of the three MS was the best option. There's a very sad irony to this that we wouldn't know until September of this year.
MS lesions had been found in my brain in 2003 when he was concerned it might be a tumor. A Stage 4 Glioblastoma - the most aggressive and always fatal form of brain cancer - was found in my oldest sister on Sept 4 2014. She had surgery to remove as much of it as they could but it continued to grow and expand and on November 2nd just two days shy of 2 months my beautiful and brilliant sister passed away here at home surrounded by her family and our cats.
Those 2 months from diagnosis to death were the hardest 2 months of my life and believe me, I've had hard times. I've endured over 50 surgeries including the amputation of my right leg for recurrent infections and have nearly died more times than I care to count between serious bleeds and sepsis. And yet, the worst and hardest 2 months of my life were the months I spent beside my big sister.
I have pretty severe PTSD when it comes to hospitals because of everything I've been through. The noises and the smells and the rooms all trigger me and flood me with horrible memories. While my sister spent over a week in the ICU she had no memory of it. I remember my time spent in ICU and visiting my sister there nearly killed me on the spot. A lot of people told me I didn't have to subject myself to the PTSD demons because whether I was there or not my sister knew i loved her. The thing of it was, this is the sister who absolutely HATED all things medical with a fierce passion. However, when I was at my sickest, when the reaper was closing in on me, my sister showed up. I had to show up for my sister. I struggle with the PTSD of my days sitting next to her hospital bed still and will continue to. I struggle with the PTSD of being the one in charge of her at night once she came home for hospice care. I have insomnia and I tend to roam around at night when I get restless and knowing that allowed my parents to sleep because there was no doubt that at some point I'd be out there with my sister.
She was pretty non responsive for her month at home in hospice care. I spent a lot of time sitting with her, holding her hand, playing on my iPad and singing along to whatever Pandora station we'd chosen for that day. At night I'd prop my leg up on the bed and start our 1am conversations with "so did I ever tell you about the time I..." I was babbling to myself because she couldn't respond to me but I knew she heard me. She learned a lot about my past and my craziness in those midnight hours.
The final night of my sister's life I knew the end was coming. I grabbed a comfortable chair and pulled it next to her bed. I grabbed the blanket that she had made for me and I grabbed my iPod. I turned on a Peter Gabriel playlist and sat with her listening to music and holding her hand. She looked at me with an eye wide open for hours which she hadn't done in a very long time. Our dad found us there the next morning our hands still together and both of us fast asleep. At 8:25pm Nov 2nd, my sister passed away.
I'd be lying if I said I wasn't struggling. I miss her very much. I miss her teasing me and I miss her laugh. I miss her bright smile and I miss hearing "hey chickee" when she answered the phone when I called her. I miss being able to go to her to talk about anything and everything. My other sister and I have joined a club no one should ever have to join - the surviving siblings club. I find peace in the knowledge that my sister loved me unconditionally for exactly who I was, not for who she thought I should be or who I used to be. She loved me for me. She supported me and she protected me the way only a big sister can.
I lost a piece of my heart and I lost a piece of my soul the day my sister passed away. I don't understand why I'm still here. I'm the one who has been sick for years on end and has faced the reaper numerous times and yet, I'm still here. My doctors have feared the day I don't survive for years now and yet, I keep surviving. Why me? Why not my sister? No one can answer those questions. All I know is that I'm here for a reason and though I'm not sure what the reason is, my sister was proud of me and I WILL continue to make her proud.
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